I have a lot to report on the medical front.  So this entry will be primarily a just-the-facts-ma’am kind of entry and will not be one of my usual reflective pieces.  I know it will be a welcome change for some and a disappointment for others.  There are enough friends and family who read this blog to be kept in the loop on what’s going on with me from the medical standpoint (if not the mental and emotional standpoints), that I need to get this out there.  I have a lot of musings to share (much of which comes from the experiences of the last two weeks) but those will be for future posts.

As I alluded to in my post, The Bliss in Making the Journey Alone, my CEA two weeks and one day ago was 19.8.  It reflected a less than one point drop during the second month of chemo, whereas it had dropped 6 points during the first month.  Despite everyone on the colon cancer forums and support groups saying that it’s a notoriously unreliable tumor marker and that it can go up during chemo, I was upset.  In part, I was upset because I’m an overachiever and I like to get the A+, the perfect 100.  When I had gestational diabetes, I was obsessive about getting my glucose levels to the optimal numbers through diet, exercise and then insulin injections, and you better believe I delivered two very healthy and appropriately sized babies into this world.  But mostly, I was upset because I was convinced the CEA levels not going down fast enough were suggestive of, in the words of my UCLA surgeon (who I spoke to right away after getting these results), “burden of metastatic disease”, disease which the chemo doesn’t seem to be taking care of fast enough nearly halfway through treatment.  I asked to speak to the oncologist after I got these results.  He took a few hours to call me back.  So I texted my UCLA surgeon (who isn’t even technically my doctor anymore), who called me within minutes (have I mentioned how much I love my UCLA surgeon??).  He said obviously, we want to see the CEA lower and that for mine and Josh’s peace of mind, I should have a PET scan; besides we were three months post surgery; it would have been time for a PET scan in any event.  If the PET scan revealed for example a tumor on the liver, my chemo treatment could be adjusted to address that tumor.  PET scans involve the introduction of glucose into the body combined with a radioactive tracer.  Cancer cells (and not other cells) consume that glucose and so the radioactive tracer lights up with the metabolic activity produced by the cancer cells.

I should pause here to mention for the benefit of other cancer patients that a good number of institutions (including Sloan Kettering), do not believe in PET scans (at least for colon cancer), on the theory that CT scans are more effective and that PET scans are more likely to produce false positives.  When I went to get my third opinion at Sloan Kettering, I was told that not only do they only do CT scans, but they only do them after treatment is completed (unless there are symptoms that would prompt earlier scanning).  For reasons that will become obvious later on in this post, this is another reason, I am glad that I went with an institution that believes in PET scan technology.

My oncologist agreed with the UCLA surgeon.  He told me to come in the following Monday for another CEA test and based on those results, we would proceed with the PET scan.

So for a week, I mulled over my 19.8 CEA and let it fester.  It got me down.  I had a few crying episodes, which is unusual for me these days.  Josh played our song (Joshua Kadison’s “Beautiful In My Eyes”) through our new Apple TV — awesome device by the way — he sang the song to me at our wedding reception.  I sobbed hysterically thinking back on that day full of promise and glorious possibilities, when we made vows about staying together through sickness and health but had no fucking clue what was in store for us or what it’s like to weather together true sickness — we still don’t fully understand, although we certainly understand better than we did that day.  I fixated on thoughts of Josh finding comfort in the arms of another woman as he dealt with the stresses of an ailing wife, a la John Edwards.  Now, just to be clear, I don’t think that Josh would cheat on me at this stage, but you never know what grief will do to a man.

Again, let me pause here to address the issue of Josh and another woman.  He and I have been blunt about Josh remarrying if I don’t make it.  I call the hypothetical woman, “The Slutty Second Wife.”  I understand that if I die, Josh would need companionship and my girls would need a mother figure, and I’m okay with that.  But I will state here for the record and to get this off my chest, any woman who encroaches on our relationship while I am still living will have to answer to me.  And to her and the Slutty Second Wife (if not the same person), I promise you this — if you screw with Josh and my children, either while I’m still alive or after I’m gone, if you find a way to get around my ironclad estate planning and take assets from my children into your grubby little hands, if you otherwise harm any of them, I will haunt you from the afterlife and I will hurt you.  You don’t want to mess with me, not now, not ever.

Okay, now that that’s out in the open, let me continue.  It was a rough week waiting for the next CEA test.  When that day came — last Monday — I had blood drawn at 11:30.  The nurse practitioner emailed me the results at 3:30; “Did you hear the good news?  Your CEA is 1.8.  It’s normal!”  I couldn’t believe it.  Normal?  Is it possible to have such a dramatic jump in one week?  Possible yet improbable, I suspected.  I went back in to see the doctor that day.  He said he was suspicious of the results and was having that blood sample retested.  And since I was already there, I should have more blood drawn for yet another CEA reading.  So I had blood drawn again at 4:30.  The CEA on the retest came back at 17.8 — how can a lab screw up so badly?.  The CEA on the second blood sample came back at 16.5.  I told the doctor, yeah, great it’s lower, but how can there be such a discrepancy in the CEA of the same person within 5 hours.  He had no satisfying response — just the unreliability of CEA and we shouldn’t hang our hats on CEA.

Because the CEA was still elevated, I went ahead and scheduled the PET scan for last Friday, right after a trip to DC for a colon cancer event (the subject of another blog post).  I had to wait through the weekend to hear the results Monday (yesterday).  At least, there was much distraction with Josh’s parents visiting and Mia’s birthday party on Saturday.  Yes, life marches on, cancer or not.

So Josh and I saw Dr. A.C. before the commencement of treatment yesterday.  All organs look clean.  2 spots lit up on the PET scan, one to the left of the spine by the psoas muscle and one in the right pelvis.  Dr. A.C. thought the spot by the psoas muscle was probably nothing.  To gain further clarity, he wanted me to have an MRI of the abdomen and pelvis performed.   Josh and I asked a series of questions:  Would the surgeon have seen these spots during the surgery?  Not necessarily.  Would the CT scan performed right after the surgery have picked these spots up?  No.  Is this scan bad?  No.  Is she going to be okay and I mean…  I know what you mean.  Yes, I think she can be cured.  I admire Josh for having the courage to ask that last question, and I admire the doctor for making such a statement.  Nice to hear but it honestly doesn’t mean much to me.  It’s not that I don’t have the courage to ask about being cured, but rather I think whatever answers, whether yes or no, is irrelevant.  Cancer is a dynamic disease.  An answer one day will not necessarily be the same answer the next day.  Doctors are not omniscient, whether in terms of good or bad prognostic assertions.

I forwarded the PET scan report to my UCLA surgeon (who is currently in Ecuador teaching surgeons how to perform hernia surgery).  He responded within a couple hours and basically agreed with everything Dr. A.C. had said.  I was feeling good and optimistic.  My organs are clean.  The psoaz muscle spot was probably nothing and the thing in the right pelvis, if cancer, likely represented only one cancerous lymph node but the MRI would tell us more.  My CEA was still elevated though so that remained of concern.

For some reason, the secretary scheduled my MRI with Josh.  He was anxious that I get it done right away.  There only available spot yesterday was at 7:45, so Josh said yes.  After I completed Round 6 of Chemo, he and I walked over to the MRI facility on 1st Avenue.  Josh went home to relieve our nanny and see the girls before they went to bed (at my insistence).  The MRI scan took about 45 minutes and involved lying in a tomb-like tube that made me think of coffins and being buried in the ground — more so that the PET scan because it is more compressed in there.  The only thing that was not tomb-like was the constant banging and clanging of the machine, some of which made my entire body vibrate on the table.  It also involved lots of inhaling and exhaling and holding my breath for significant periods of time.  I got done a little after 9, took the subway and didn’t get home until after 10.  It was a long exhausting day.

I got the MRI results this afternoon.  The psoaz muscle spot, the one that the surgeon and the oncologist thought was probably nothing, is in fact something.  There are 2 cancerous lymph nodes in that spot — one is necrotic (i.e. dead cancer) and the other is alive.  Now, you see why I don’t put too much stock in doctors’ prognostic assertions.  They are far from omniscient.  The MRI could not see anything in the right pelvis.  This does not mean that there’s no cancer there.  It just means the MRI could not see anything.  I forwarded the MRI report to Josh.  Upon review, he is “rationally optimistic.”  The fact is that my organs are clean, which is a really good thing and for there to be 2 lymph nodes involved seems like not a big deal.  In a strange role reversal, I am not so optimistic.  First of all, PET scans and MRIs cannot reliably detect growths on the peritoneum.  The one tumor found (and removed) outside of my colon during surgery was a drop metastasis on the peritoneum above the bladder.  This is why everyone is very focused on my peritoneum.  These recently discovered cancerous nodes are likely in the peritoneum.  From the beginning there has been talk about me being a good candidate for HIPEC surgery, a grueling surgery that involves a massive incision, bathing my abdominal cavity in heated chemo for 90 minutes and then removing the peritoneum.  It’s also known as the “shake and bake”.  The cut is ugly and the recovery is hard.  I feel like these MRI results put me that much closer to HIPEC and I’m not happy about it.  I’ve told Josh that the risk has to be sufficiently high for me to undergo HIPEC.  In any event, it seems like a diagnostic laparoscopic surgery, in which a surgeon would go in to just look around, is an inevitability given the limitations of scans for detecting peritoneal growth.  I also felt like I was diagnosed as Stage IV because of a technicality because of a tiny drop metastasis to the peritoneum — a drop signifying non-circulatory invasion because it’s a literal drop off the primary tumor and not cancer spreading through the lymphatic system.  I felt like I was more a Stage IIIC, than a Stage IV. Now, these MRI results confirm that I was rightfully categorized as a Stage IV and that I have metastatic disease.  All numbers I know, but numbers matter to some degree, no matter how much I want to deny their importance.

The nurse practitioner said there are local treatment options and that Dr. A.C. would speak to me about them later this evening.  I can hardly wait.  This cancer shit is a roller coaster and it will make you throw up again and again, both figuratively and literally.  It is not for the weak of heart.  If you’re going to fight this war, you have to have the guts for it (no pun intended).  I have no doubt that I have the guts but I still have to go through the ups and downs, and the downs suck.


6 Comments (+add yours?)

  1. Bill Ide
    Oct 22, 2013 @ 20:46:38

    I was told by a friend with a tough cancer that getting the right doctor to be your coach and navigator is important. My experience has been easier said than done. Everything is so siloed and specialized, that it is tough to navigate through all the scans,etc. You are doing an amazing job of managing your treatment. Positive thoughts headed your away. Bill


  2. Yinglingr
    Oct 23, 2013 @ 00:49:56

    Hi Julie – we met briefly at the colon cancer gala in DC. I’m sorry to hear this news but am glad you’re so proactive in your care – now that you know what’s there, you can deploy more weapons against it. I had the shake and bake surgery exactly a year ago. You’re right that it’s a rough procedure, but recovery wasn’t too much more difficult for me than my previous two surgeries – and most importantly, my scans have been clear since. The prospect of getting that operation terrified me at first, but the more I learned, the more convinced I was that it was the right course of action for me. Thinking of you – I’m happy to share any info that might be helpful.


  3. Tyler
    Oct 23, 2013 @ 20:26:20

    Hi Julie, It is always amazing to me how health care needs to be so closely managed by the patient themselves. I am glad that you are being proactive. Glad that you put the warning out to the second slutty wife, but she will simply be a joke for you and Josh to revisit in the years to come. Will you have surgery on the new spot? I will wait for the next post. Hang in there and keep fighting the intelligent fight.


  4. jdepp
    Oct 31, 2013 @ 03:31:49

    Hello Julie,

    I’m a stage 4 from the Colon Club. If it turns out that you need a laparoscopic survey of your peritoneum, then I’m here to say that it’s doable. My surgeon rummaged around for about 45 minutes, then closed me back up. For about 5 days I felt like I’d been punched in the gut but it healed quickly & left very little (if any) scar. As for your CEA woes, the marker may actually be a decent one for you so it’s good, if frustrating, for you to track. It varies with things like dehydration & inflammation, but when it’s up it usually does mean *something,* though the something is often very hard to interpret. Good luck & best wishes to you. /jdepp


  5. zaida
    Mar 31, 2014 @ 17:02:42

    I am so happy to read all this comment You all has been such a big help, to me, i had stage 3 colon cancer stop quemo in Nov 2013, now my CEA keep rising and I am nervous, I am squedule for a pet scan this week, I am so scare cause really don’t think I could go back thrue quemo, how can I join the club, I will like to be more involve in colon cancer seminar.


    • julielyyip
      Apr 21, 2014 @ 22:15:52

      Hi zaida. I’m so sorry I haven’t responded sooner. Have been recovering from surgery. You should have your doctor figure out why your CEA is rising. If you want to join colontown, go to colontown.org and request to join. It is a Facebook group so you have to be on Facebook.


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